It’s hard losing abilities you’ve had all your life. Of course, that’s just part of having SMA. Once upon a time, I could sit up on my own. Now I can’t. Once upon a time, I could feed myself and lift my phone on my own. Now I can’t. I am no stranger to loss. But sometimes I forget how difficult it is to accept a new normal — especially when a new normal is significantly less than what it used to be.
I haven’t lost anything significant, and I hate waiting for that to change. Even my driving skills feel up for grabs. I’m not as dexterous as I used to be, and am wiped out by pretty much any sort of difficult terrain. As I write this, I can feel my body protesting; I spent the entire day at an apple orchard, slogging through gravel and grass, and now I’m paying for it. I used to love the obstacle course that is the great outdoors, but it’s little more than a pain in the butt these days. I avoid it when I can, and not just because I have year-round allergies and weather-dependent tension headaches.
Lately, though, I’ve been feeling antsy. My graduate program is completely online, and when I’m not studying, I’m probably working on my book. I have plenty to keep me busy, and no real reason to leave my basement bedroom. But sometimes I need to get out of the house — which isn’t as easy as it used to be.
If I’m with my parents, I’m fine. But if I’m with my friends, or even just my personal care assistant (PCA), I’m anxious. It’s even worse when I’m outdoors, because so much of my energy is, out of necessity, allocated to surviving; weaving through crowds, for instance, or avoiding giant potholes hidden by tall grass. I have to go slow. I have to be precise. And that kills me.
I’d rather stay at home than slow my friends down. Intellectually, I know I’m not a burden. If people didn’t want to spend time with me, they wouldn’t invite me to things. But my heart hasn’t quite caught up with my head yet, so I stay home, scrolling through social media feeds and wishing it was me doing this or that, wishing I was the one living my life.
I told my therapist about all this, and naturally, she had some wisdom to share: “Can you feel the anxiety and do it anyway?” This is the heart of acceptance and commitment therapy (ACT) — a protocol I studied last semester and immediately fell in love with. It’s a hard pill to swallow. Many times in session, I feel like I’m getting a taste of my own medicine, being a counseling student and all. But there is truth to ACT, and I think it could potentially change my life.
Feel the anxiety and do it anyway. Today I went to an apple orchard with my PCA and her daughter. I won’t pretend it was easy; it was very, very difficult, and I’m exhausted. But it was, without a doubt, worth it. I still felt like a burden, like I held everything up, but instead of letting that feeling control me, I actually forced myself to take a break. Instead of powering through my exhaustion, I rested. I watched my PCA’s daughter tromp through the playground in her red leggings and black-and-white checkered jacket, and it was nice. Not once did I regret it.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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